Hi my name is Andree.
My husband and I have three gorgeous daughters...with two of them having Stargardts' disease. Neither of them want to talk about it on the net but as their mother I feel I also have a story to tell.
It took about two years and much frustration before we found out that our eldest daughter at the age of 12 had a genetic eye disease. We had known for some time that something was a miss but couldn't figure out why she got so close when reading things and why she never made eye contact. Opthamologists and optometrists also couldn't figure it out. Eventually we found an optometrist who listened....and found the tell tale yellow flecks. We were in shock at the time, but our daughter thought it was wonderful - because at last....someone had found there was a problem and that she wasn't mad.
Since then we've spent much energy researching and investigating all sorts of things to try and help our daughter. Despite it all she's just got on with her life and doesn't really like talking about it or having much focus put on the problem. She does well at school and is active in sports. Initially she used a binocular but now at the age of 14 uses a monocular in class.
Early on, after the initial diagnosis we tried to get gene testing to see if either of our other two daughters had Stargardts' disease...but the genetist who spoke with us said there was no cure so we should just wait and see. Our second daughter was 11 at the time and was past the age when our eldest started having problems...so we figured she was OK. We just had to wait for our youngest. I was a bit annoyed about it but there was nothing to be done.
As luck would have it ...at the age of ten our third daughter started having problems reading the blackboard. We took her to our optometrist who found the same tell tale flecks. An opthamologist confirmed the diagnosis.
We've been down the path of high dose vitamins and naturopathic potions. Our eldest daughter has used the echo therapy drops which are recommended by a doctor in the US with no success. She's sick of using the drops and is now doing nothing.
Earlier this year the whole family had blood samples taken and sent to a Dr Stone at Iowa University. He's conducting a worldwide study into genetic rare eye diseases. It could take several years before we get an outcome on that front.
It has been very tough for us as parents...particularly now with our youngest daughter's vision deteriorating as we speak.
Our eldest daughters visual acuity hasn't changed since she was first diagnosed...but our youngest's vision is just starting to go. Thankfully though, she has a wonderful role model in her big sister. We keep saying and reassuring ourselves that it's not the end of the world - they're not sick and they're not dying. Our daughters have a wonderful life and don't seem to let Stargardts interfer with what they want to do, although it can be frustrating..
For sometime I was very hard on myself for not listening and believing my daughter when she said she couldn't see things. All the medical experts we'd seen said there was nothing wrong. So I pushed her to do things that I now know were impossible. Over time and after much heart ache I've learnt there is no prize on dwelling on ones mistakes. I still struggle to understand what my daughter sees. She doesn't like talking about it too much.
Our youngest daughter is quite keen to talk about her vision and telsl me when things are changing or are different. Her night vision is not good.
Our second daughter without Stargardts has also struggled at times. We've found it can be just as difficult for her as it is for the others.
It's funny how neither my husband nor I feel guilty about our girls having Stargardts. It's not in either of our families ...and I suppose we just look at it as the role of the dice. No one knows what's in store. Sometimes I can't believe it has happened us but that's what's happened and so we deal with it.
I hope our story helps others who are going through similiar dramas.
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